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Items tagged with: POTS
Medical Costs & Housing
gofundme.com/f/9apnu9-medical-…
"In March of 2020 I was attacked on my way home from work.
The man grabbed me, shook me, coughed in my face & laughed ‘You’re sick now’
I thought it was a cruel joke. I was wrong.
I had contracted Covid & I never recovered.
I have been diagnosed with ME/CFS, POTS & MCAS.
I am mostly bed bound & barely able to manage the most basic of tasks.
I have no financial support from from family or government & no supplemental insurance.
I have been unable to work since, after over 2 years my savings have been wiped out & my hope of a spontaneous recovery has dwindled.
I’ve lost my business & my autonomy."
#Covid #LongCovid #MutualAid #Disability #MECFS #POTS #MCAS #CFS
Maskless healthcare workers - would you be willing to tell me WHY you don’t mask?
I’m not looking for “because I don’t have to”. I want to know why you don’t mask mirror for patients and/or CHOOSE to take precautions?
Respectful answers only please. I’m genuinely asking.
I’m working on an article about this and I feel I’ve got a good grasp on the “why” for those who DO mask - but I genuinely don’t understand those who refuse.
You’re in a profession where people pit your lives in their hands - it seems nonsensical to put them at risk. You KNOW you’re dealing with the most vulnerable among us - yet opt not to protect them.
A mask won’t harm you in any way - so what reason is there NOT to do it?
I would appreciate boosts for visibility - and there may not be many maskless HCWs on here so I also invite people to share stories of times their HCW refused to mask for them (and why - if you know).
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans
Ugly laws will be enforced in Louisville. Medical masks will be allowed at “police discretion”.
Police chief says: “We do have to look at behavior of person, what they're doing at time, those kinds of things."
I have a disability that makes me LOOK nervous. I “appear” like I could be doing something wrong. As a result these bans terrify me.
Disabled people have been begging others to mask for years because we were afraid of this exact outcome.
Failure to normalize masking means those of us who NEED to wear them are seen as outliers. Deviants. Possibly criminals. There’s a target on our back.
Medical exemptions are not the answer - they leave too many people behind.
Everyone should have the right to protect themselves from a deadly & disabling virus. Whether already disabled or not.
Banning masks and then saying that the police will determine who is “legit” in wearing one based on their overall behaviour? Its terrifying.
This is exactly HOW profiling occurs. These bans will disproportionately impact marginalized individuals and people of colour.
They could also impact someone with a condition like mine. I’m immune compromised and high risk for Covid complications - so I ALWAYS wear a fitted respirator when I’m outside my home.
I also have dysautonomia - a literal malfunctioning of my autonomic nervous system.
If I’m upright - I “look” nervous. I’m sweaty, shaky, twitchy and sometimes wobbling. I’ve been accused of being drunk in public on MANY occasions.
It’s not my fault - Dysautonomia means I can’t regulate my blood pressure, heart rate, sweating & even pupil dilation.
The things that cops are trained to look for and consider “suspicious” are all symptoms of my disease.
In the past - the worst thing I had to worry about was being accused of public drunkenness. Even THAT was scary for me.
Mask bans mean I could be arrested and charged with a crime. Just for trying to keep myself & others safe.
I tell this story to encourage others to speak up against mask bans. To mask up in solidarity and help us normalize them so they will be harder to ban.
To encourage people to stop assuming if you have a “legitimate medical reason” you won’t have to worry. We DO worry.
We need less judgement, assumptions and gaslighting and more allies. These laws are dangerous. They will lead to more death, disability AND division.
Many of us have difficulty convincing HCWs of our illnesses - what hope do we have with police?
Please - if you CAN mask - now is the time. You don’t have to wait for a mandate or permission. You can choose to say “enough is enough” & be part of the solution. Break chains of transmission. Protect the vulnerable. Don’t allow government to decide who is & isn’t expendable.
We all have power and agency and can choose to do the right thing. We don’t have to sit idly by and accept repeated covid infections & exclusion of disabled people from public life.
Let’s work together and stop these bans before it’s too late.
wdrb.com/news/louisville-polic…
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #UglyLaws
“I’m not testing for Covid. If I’m sick I’m sick. What difference does it make?”
It makes a big difference. You SHOULD be testing. There’s things you should do differently if it’s Covid.
Governments & public health aren’t informing you - but that doesn’t change reality.
First things first - if you’re positive - stay home. If it’s at ALL possible for you to isolate - do so.
CDC guidelines suggesting you can go back to work when you’re fever free make zero sense - they’re economically driven. If you’re positive - you’re contagious ..
If you share a home with others (pets included) isolate away from them. If you can stay in a room with an open window and a HEPA filter - there’s good odds you can reduce household transmission. Wear a fitted respirator in all shared spaces.
If you absolutely can’t stay home - if you don’t have paid time off or are being forced into work - for the sake of other people wear a mask.
The best mask you can afford that fits your face. A well fitted respirator offers excellent protection for you AND those around you
Rest! Rest as much as you can and when you think you’ve had enough rest - you should rest some more.
Even if you feel “all better”. Mental activity counts too - rest your brain and your body.
Studies suggest that resting while recovering reduces odds of Long Covid.
Keep a record of your infection. Document when you got it, how many days you were positive, severity of symptoms etc.
If you become disabled - this information could prove invaluable if you need social supports, disability, medical care etc.
Consider adding additional layers like Paxlovid or Metformin (if you qualify), CPC mouthwash and nasal sprays or irrigation to reduce viral load. Every little bit helps!
Many people say “well if you’re sick you should do these things anyways” and I don’t disagree. But covid isn’t like a cold or a flu. It’s more contagious, it’s killing and disabling a much larger number of people and precautions MUST be taken.
It’s a multi system vascular virus - and reinfections increase your risk of developing Long Covid.
If you care at all about other people - you should be testing so that at the bare minimum you can take steps to protect others.
I’ve had friends express how glad they are that they didn’t visit me after coming down with “not covid”. They say “this is SO bad it would have killed you.”
They can and do show concern for me - but don’t extend that to the other vulnerable people in society.
Keep testing. Confirm if it’s Covid. Take steps to protect yourself AND break chains of transmission. Don’t fall for the narrative that it’s “just another cold/flu”… it’s not.
That narrative is driven by economics and politics. Not by sound science or health policy.
The most radical thing we can do right now is wear a mask. Fight mask bans. Clean the air. Tell leaders that we’re done being sick all the time. We’re done with the minimizing.
We’re going to protect one another.
For more on how to prevent COVID in hospital (though the tips apply to most public settings) my full article on mitigations is here: disabledginger.com/p/how-to-st…
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare
How to Stay Covid Safe When in Hospital
A guide to navigating the risk of hospital acquired Covid - as well as how to manage overall risk of nosocomial infections and hospital derived complications.Broadwaybabyto (The Disabled Ginger)
Is there anything about POTS, MCAS, EDS or chronic illness in general that you’ve always wanted to know? Something that you don’t think gets discussed enough?
I’m building out a series of posts on these difficult conditions - and open to any and all suggestions!
#chronicillness #EDS #POTS #MCAS #Dysautonomia #EhlersDanlosSyndromes #spoonie #mastcells #disabilty
Me (in ER for issue unrelated to throat/mouth): “I would prefer not to remove my N95.”
Dr: “You’re not dictating care. I’m in charge. If you don’t like it you can leave.”
Me: “I’m extremely high risk - please let me keep it on.”
Dr: *sigh* “You’re not going to get Covid HERE”
I resent the “you’re not dictating care” line. It’s MY body. I should get SOME say in what happens to it.
I wasn’t self diagnosing or telling them how to do their job - I just wanted to keep my necessary PPE.
I would understand if examining my mouth, nose or throat was relevant to the emergency I was having - but it wasn’t. This felt like a “test” to see how compliant I would be - and it’s not right to test patients and expose them to a deadly and disabling virus.
I also loathe the emphasis on the word “here”. It’s not the first time I’ve heard it in the hospital either. Many HCWs act like the idea you might catch Covid in their care is absurd.
I feel like it should go without saying that it is NOT absurd. Hospitals and schools are consistently the places that drive community spread. The ER is arguably the highest risk setting because it’s crowded, you’re there for a LONG time and people with covid will go there if they need care. To suggest it’s impossible to catch covid there is to basically show you’re completely detached from reality.
I asked them to check my chart to see how clinically vulnerable I am (they skimmed it). I asked if there was any diagnostic reason I needed to remove my respirator (they scoffed and provided no answer). I declined.
At this point the energy in the room shifted. I was there for a cardiac emergency and up until then had been taken quite seriously. It changed on a dime. I finally asked if I could speak to the charge nurse or get a cardiology consult called down as I didn’t feel my issues were being properly addressed.
I was told “if you’re unhappy with the care you can avail yourself of MAiD”
For those not in Canada - that’s our medical assistance in death program.
To be clear - I don’t think this doctor was actually suggesting I end my life. I think they were just pissed off and trying to hurt me. That said it’s wildly inappropriate to EVER say that to a patient - and I hate that I didn’t have an advocate with me to witness that atrocity.
I ended up leaving and going to a different hospital where I was diagnosed with a serious issue - and I didn’t have to remove my respirator for them to figure it out.
Encounters like this are why I say you should always have an advocate when you’re in the hospital. It shouldn’t be necessary - it’s appalling that it is - but we have to play the hand we’re dealt.
I did lodge a complaint but as of now nothing has come of it - and based on past experience I doubt anything will.
I did wrote a guide on how to be a good advocate for a disabled patient - and it also includes what to do when you don’t have one. Though this story proves that sometimes even if you do everything “right”… you still receive horrible care. It’s one of the reasons I tell my stories and advocate for patients - I want to change things so that no one is ever treated the way I’ve been treated.
disabledginger.com/p/how-to-be…
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcar
I read a beautiful article today from someone who was effectively “coming out” as chronically ill. She spoke of the struggles of admitting to the world that she was sick - of putting it in writing for everyone to see.
It says a lot about our society that people are so afraid to admit they’re disabled or chronically ill - but I get it. I fought the label for SO long. My illnesses are invisible - so I could generally hide how sick I was from other people.
Until I couldn’t. Hiding your true and authentic self takes a toll. Pushing through the pain, plastering a smile on your face and ignoring what your body is crying out for? It never ends well.
It’s a big part of why I started The Disabled Ginger. My hope is by sharing my stories and struggles - by being loud, vulnerable and honest about my disabilities - I can help others arrive at a place of acceptance faster than I did.
There was something else in her piece that’s been niggling at me though - which is that we share the same diseases and we were both diagnosed before they became “trendy” on social media. As a result - we have fewer barriers to care than younger women who are trying to get a diagnosis now.
This fact makes me livid. We should ALL be livid. We owe a debt of gratitude to the content creators who are making videos and art about these rare but not so rare chronic illnesses. If not for them many women would never figure out what’s happening in their own bodies.
The average length of time to a POTS diagnosis for a female patient is SEVEN years. Please read that again. Seven years.
That’s years of suffering with debilitating fatigue, tachycardia, gastrointestinal issues, fainting and more. Years of being told you’re “just anxious” or worse - a hysterical woman.
The people making videos and talking about these conditions are arming young women with valuable knowledge they can use to (hopefully) get diagnosed faster. Early diagnosis is key to avoiding worsening symptoms and setbacks. I had so many injuries from fainting - some permanent. How many could have been avoided had I know what was wrong with me sooner?
I so appreciate the author for writing such a vulnerable piece about coming to terms with being chronically ill. It’s a hard thing to do. Taking that brave step of putting it out into the world - of admitting to everyone that you’re disabled - takes courage. We should support the heck out of people when they do it.
Also I agree with her rallying cry - don’t feel sorry for us. Feel livid. Livid at the time it takes to be diagnosed. At how few treatments there are. At how much misogyny, discrimination and ableism we have to endure.
Get loud. Get angry. Let’s change things.
Article here: meandorla.substack.com/p/somet…
My website The Disabled Ginger is here: disabledginger.com/
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare
When you say “just stay home” or “your health is not my responsibility” in response to pleas for masking in hospitals - you’re telling us our lives don’t matter.
Disabled & high risk people have been shut out of ALL public spaces. Tossed aside for “back to normal”
We’re asking for masks in ONE place - the place we have no choice but to go.
We’re sick, vulnerable and scared. It’s not unreasonable we want to avoid catching a deadly and disabling virus while in the hospital for necessary medical care.
We didn’t choose to be sick. We aren’t out having a fun time when we go to the hospital. It’s already stressful and difficult without the added fear of infection or being psychologized for wearing a mask.
Lastly - our health kinda IS the responsibility of healthcare workers and hospital administrators. We are literally there to get better. They have an oath to do no harm.
They’re letting us down. Infecting patients despite knowing how to prevent it. Most hospitals aren’t even TRYING anymore.
If you’re that anti-mask … YOU can stay home from the hospital. You have literally every other public space.
At a certain point you have to recognize that the world doesn’t revolve around you & that while you’re throwing a temper tantrum over your “freedom” to not mask… we’re fighting for our lives.
Please - help us fight for masks & clean air in hospitals. It will benefit patients & staff. It’ll stop more than just covid. Even if you don’t care about the vulnerable - you may one day become one.
When that day comes you might wish you had helped us create safer care.
Until hospitals and institutions start taking airborne spread seriously - individuals must take steps to protect themselves. It’s costly, exhausting and unfair - but it IS our best chance.
My guide to staying Covid safe in hospital: disabledginger.com/p/how-to-st…
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare
I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’
I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.
I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.
I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.
I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.
When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.
When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.
In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.
My article on how to be the best possible advocate for a disabled patient: disabledginger.com/p/how-to-be…
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms
How to be an Effective Advocate for a Disabled Patient
Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency and control in a hospital environment. Having an effective advocate can vastly improve the experience.Broadwaybabyto (The Disabled Ginger)